Re: Amy's Dementia history

[Guest guest]

In a message dated 99-05-11 17:14:05 EDT, you write:

<< Hi Lynnie, If you don't mind, could you explain your daughters dementia

(how

and when it began)?

Thanks Becky-daughter 16 mito. disease >>

Dear Becky:

I'd be happy to explain what I can...

Amy was born on her due date. " By the book " baby for the first three months.

Then each time she had injections she would become very ill and extreamly

lathargic. By seven months Amy's schedual had turned upside down and she

would cry for hours as if someone where sticking pins in her.

Between 7 and 11 months Amy had muscle episodes where her muscles would lock

up for an hour or so. Amy was behind developmentally. At 11 months Amy had

a feaver and was just coming down from a flue-like episode when she had a

Generalised seizure... the first of millions! By 5 years old she was having

seizures AND " parkinsonisums " so her doc put her on L-dopa.

At 11 years the L-dopa didn't cover the parkinsonisums any more and the

Neuro. put her on Sinamet thinking it would cover more areas of her brain.

It worked for a while. Then in the summer after sixth grade we noticed a few

strange things. Amy was becoming aggressive, argumenative, contrary. Her

reading (up until then she was a vorashous reader) stopped all together as

well, her grades dropped, she couldnt concentrate. It seemed like much of

this could be attributed to adolesence!

By the end of her freshman year in High School her teacher called us and told

us that she had called in the school Psych., and that Amy was telling them

that the walls were talking to her! This was definently NOT adolesence!

At home Amy started kicking me in the back when I wasn't looking. She would

chase and hit her younger sibs and bonk them on the head for no reason. She

would leave the house when we wern't looking and get lost. We'd find her a

block away at the Elementry school in a daze.

One day at about 14 years old we were at a Neuro apt and and the Neuro left

the room. Amy got mad for no reason (typical of her mind set at the time)

and Amy turned over a metal tray. When the Neuro heard it she came running,

asked me how long that had been going on, asked Amy a few questions to see

how " current " her thinking was. Well, it wasn't very current. At times she

knew who I was and at times she didnt and many other symptoms! The Neuro had

a nurse take Amy out for a soda while she informed me that Amy had

third-stage dementia. She put Amy on hospice services so that we could get a

break twice a week and had some help around the house.

Currently, Amy's dementia is managed by a combination of melarill and

cogentin as well as a VERY protected environment. We have learned what sets

Amy's dementia into a tail spin... we avoid going out into public where there

is a croud, going into restarants that have a " din " or lots of echo and

noise, we keep Amy and her two younger sibs (who are Fetal Alcohol Syndrome

children that we adopted as infants)

at a distance when they get particularly loud, and we make sure she has

regular meals with ballenced snacks between.

Well, I hope this has been of some help to you. Feel free to ask questions!

Is this similar to your experence?

Lynnie